Day: Friday, August 15, 2008

The GI doc was just here (2 p.m.). He’s keeping Bruce in the hospital until “Sunday or Monday.” Then he’ll switch him to oral antibiotics and steroids.

Doc mentioned trying the newest Crohn’s drug, which would be a maintenance medication. The disadvantage of the new drug vs. Humira, which we injected at home every two weeks, is that the new drug is administered at the hospital. Bruce had inconclusive results with Humira. Because he had just had surgery, which we believe was what finally did the trick on the last fistula, we never could tell whether the Humira was doing any good. Also, he had an injection-site reaction every time he had a dose of Humira. The area would swell and itch. We would be willing to live with that if we thought the Humira was really helping, but the doc is ready to try the new drug in a few weeks. More on that later.

Bruce slept almost seven hours last night! He was “in and out” during Michael Phelps’ Olympic events but managed to see him win his sixth gold. After that, he was “out” and didn’t wake up until 5 this morning.

He has gained 10 pounds since Monday. That should be “good news” but is a little worrisome (to me, anyway) because it’s so rapid. He lost 6-8 pounds last week (in about six days) and gained 10 in four days this week. Rapid weight loss and gain is hard on the ticker (and other systems). Also, a lot of the gain is in fluids (he calls himself a water balloon). But praise God he is gaining.

His blood sugar just now (11:45 a.m.) was 182. The nurse just left the room, probably to go get another insulin shot for him.

Bruce started eating solid foods at lunch Thursday and has done pretty well with it.

The surgeon visited Thursday evening (right after I went home to feed the dogs, just as I knew he would). He said he didn’t think surgery was indicated at this time but that he would see Bruce in his office after he’s discharged from the hospital. The doc can see Bruce’s butt better in his office, with the proper lights. So that’s an extra charge for an office visit because he doesn’t have a good enough light in the hospital.

The gastroenterologist hasn’t stopped by yet today, but I imagine he will start talking about sending Bruce home. My guess is that Bruce will go home Saturday.

Bruce is always very sick when he comes to the hospital, but, as is often the case when he has a roommate, the roommate is sicker. (He wrote about that in February.) And this roommate has never been hospitalized before, so it is a whole new world for Mr. G.

We have become the “experts” in how this whole thing works, although I hope we are humble enough to realize that’s not really true. We have learned a lot about how this hospital works (at least the daily care part of it, where you learn the nursing staff’s names and they learn yours, you build trust and care, you share family news, such as the announcement of the nurse’s week-old baby, whom he hates to leave every night when he comes to work — the part that makes the difference between pill-pusher/pill-taker and true caregivers and care receivers), but we know we have a lot more to learn. We have obtained a lot of medical information in these nearly 10 years since Bruce’s diagnosis, but we are not doctors, not pharmacists, not dietitians. Not medical researchers. We have daydreamed about pursuing advanced medical degrees so we can help understand and fight this horrible disease. We have seen firsthand, many times, how there are just not enough hands to take care of everyone who needs it.

But we try do our part, giving small bits of information, even comfort, to the “new guy,” who sees this all as one big mystery. We hope it helps.

As for my part, I try to remember what a comfort it is to be in the care of the One for whom none of this is a mystery.

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